'You cannot shut somebody like Freddie inside, it’s not human' 

Henrietta and Michael Spinks are trapped in a lockdown nightmare with their two disabled sons - and are facing a financial crisis too

Since the lockdown was announced, Henrietta and Michael have been struggling to care for their two disabled sons 
Since the lockdown was announced, Henrietta and Michael have been struggling to care for their two disabled sons  Credit: SWNS.com

Henrietta and Michael Spink live in a picture-perfect, thatched cottage in a remote area of Cornwall. The house is exquisite, all wood beams, wonky stairs and shelf after shelf of books. It should be the perfect place to spend a peaceful few weeks as coronavirus sweeps Britain. Instead, the Spinks are trapped in a lockdown nightmare.

The pink cottage is also home to the Spinks’ two profoundly disabled sons, Henry 32 and Freddie, 28. It’s hard to imagine anywhere more unsuited to chair lifts and wheelchairs. Most adults with complex needs end up in residential care - but Henrietta and Michael, an expert on Islamic art, have always believed that providing top quality care for their sons means keeping them at home. 

At the best of times it has been a struggle, but now the simple things that make life bearable have been taken away. The day centre where Freddie socialises has closed. So has the swimming pool where Henry – who is confined to a wheelchair – had recently learned to stand up.

“Freddie is obsessed with going to Tesco but we can’t take him. He loves our local church, but the door is locked. What’s so sad is that we often go, he says his little prayers, and we hardly ever see a soul anyway,” explains Henrietta.

Like the rest of the nation, they are allowed to leave the house for one period of exercise a day, but that simply isn’t enough. Freddie is “like a 16-stone, very wilful toddler,” who careers around the house, causing mayhem.

Even when they do get outside, they are limited in how far they can go without driving to another area (which the police are discouraging) as Henry weighs around ten stone and his wheelchair an additional four: “It’s very hilly around here. We can’t push 14 stone uphill and the NHS won’t provide us with an electric wheelchair unless Michael and I become disabled,” says Henrietta.

So their new reality is the whole family, plus two daily, council-funded, carers each for the boys – eight adults in all – crammed into the cottage, which is long but only one room deep, like a railway carriage.

“How long will it be before I feel like putting my head in the oven?” asks Henrietta. “I am trying to keep my sense of humour but I am concerned for my sons’ health and my sanity. If it was just Michael and me, my God, how many books could I read, how many films could I watch, how many quilts could I make. But right now every waking hour is filled with trying to entertain two people who simply don’t understand what’s going on.”

Both Henry and Freddie have rare, poorly-understood genetic conditions. Henry was born apparently normal, yet he has never been able to walk or talk, suffers from seizures day and night, and is doubly incontinent. Freddie was given a one per cent chance of survival at birth. A massive diaphragmatic hernia meant that his guts were crammed into his chest cavity. He required immediate surgery and while on life support in a special baby unit, suffered a stroke.

For the first few years, Henrietta, 58, and Michael, 63, soldiered on alone, with Michael still working full-time for the family auction house, Spink & Son. A fight with their local authority, then Wandsworth in south London, over their son’s schooling – which they took to the High Court – cleaned them out financially and they were forced to sell their house. 

The Spinks are unusual in trying to look beyond their sons’ disability, treating them as if they were just two, ordinary, young men in their prime. At their Cornwall cottage, which I visited earlier this year, Henrietta proudly leafs through an album packed with pictures of family outings, including Freddie careering down a log flume and Henry at the Royal Albert Hall.

“To be disabled is so imprisoning,” she says. “As human beings, we crave stimulation – theatres, museums - to choose we want to eat, and where we want to go. That is removed if you don’t have capacity. It’s left to me to interpret what’s best.”

As we talk, Henry sits silent in his wheelchair – only able to communicate with his eyes – while Freddie lumbers about, laughing and wanting a hug one moment, tearful the next. 

Henrietta and Michael Spink with their two sons. Both Henry and Freddie have rare, poorly-understood genetic conditions. Credit: Jay Williams/COPYRIGHT JAY WILLIAMS

“They can’t pick up a book and read,” adds Henrietta. “That’s not open to our boys, being out in the open air and being sensory is what matters.”

She would like to see people with complex disabilities given an exemption from the current lockdown guidelines. “You cannot shut somebody like Freddie inside, it’s not human,” she says. “What would be ideal is if the National Trust could open its grounds for the disabled. I’m not talking about people with blue badges who can’t walk very far, but people with serious, complex needs... if they could allow carers and disabled into places like that it would make a huge difference.”

Her words echo those of Prince Harry, who this week spoke to a group of British parents of disabled children, via Zoom from his new home in Los Angeles, and called on politicians to prioritise families with severely disabled children. “Hopefully through this video and other things we will make it clear and obvious to the Government and everybody else that you guys are in the vulnerable bracket,” he said, in his role as patron of the WellChild charity.

But for the time being, the Spinks must follow Government guidelines, which has meant giving up the precious three days every other week (two nights) that Henrietta and Michael usually spend in London, when they have overnight carers to give them respite. That time also allows Michael, an independent art consultant with private clients, to work.

At the moment, even if Michael could travel to London, he needs access to libraries, which are closed, and the economic fall-out from coronavirus is bound to hit the art market. 

The boys’ care may be council-funded, but for family running costs the Spinks are totally reliant on Michael’s earnings, so they face a financial crisis. It’s why they’ve set up a GoFundMe page to help them through: “Our electricity bills are huge. The boys’ clothes and bedding need constant changing, so the washing machine and dryer are on half a dozen times a day. They need to be ferried everywhere so we spend a fortune on petrol,” says Henrietta. “Financially I have no idea how we are going to survive. Not a clue.”

Their focus is on the immediate: how to keep the boys healthy and fed. “When everybody was panic shopping, I went to Lidl with Freddie and it was packed,” says Henrietta. “Freddie doesn’t do waiting but it wasn’t the kind of climate where you could say ‘I’ve got an autistic son, could I go in front of you?’ I probably would have been murdered. So I am absolutely reliant on our local shop now.”

The boys are too heavy for her and Michael to handle alone, so their carers getting ill is a constant worry, as is the fear the boys might get infected, despite their best efforts to keep washing their hands and disinfect every surface. 

At nights, they are woken up to half a dozen times when Henry has epileptic seizures (as has happened five nights in a row this week), so exhaustion makes providing distraction or reassurance even harder.

“Freddie has gone into panic mode. He picks up on conversations and knows something is wrong. I’ve tried explaining but he can’t understand it. Who can? Even I look at the news and think “Wow, can this be real.’”

Henry and Freddie Spink’s fundraising page can be found at: www.gofundme.com

https://www.gofundme.com/f/g7srh-henry-and-freddie-spink

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